Understanding and participation in genetics research among Nigerian mothers of children with orofacial cleft: a qualitative study of prior genetic study participants

This study sought to identify strategies to increase the level of participation of orofacial cleft (OFC) caregivers in craniofacial genetics research as well as assess their understanding of genomics research and secondary findings (SF). This was a qualitative study. After obtaining informed consent, we conducted four focus groups with an average of 7 participants per group. The study participants (females) were 28 caregivers of children with non-syndromic OFC attending the multidisciplinary outpatient orofacial cleft clinic of a tertiary health facility in Lagos, Nigeria. Caregivers were purposively recruited, and data were analyzed through thematic analysis. The key findings in this study are (a) voluntary participation in past genetic studies, (b) ongoing interest in participation in genetics research, (c) request for accessibility and explanation of genetic research results, (d) limited general knowledge of genetics and genetic testing and (f) a relatively low understanding of secondary findings. The participant’s responses highlighted the need for use of simple and relatable language in OFC- related study information documents, including the informed consent form. There was a strong desire to have results returned, including SF among interviewees. However, there is need for increased participant education on the concept of SF. Importantly, there is a need to bridge the gap in workforce and health care provider education to provide genetic counseling services in resource-constrained settings.